Navigating pregnancy, postpartum care and reproductive autonomy with sickle cell disease in Uganda: an interpretive phenomenological study in Eastern and Central Uganda

Introduction Pregnancy and the postpartum period are high-risk transitions for women living with sickle cell disease (SCD), yet evidence from Uganda has focused largely on clinical outcomes rather than women’s lived experiences of reproductive decision-making and maternity care. This study explored how pregnant and postpartum women with SCD in Central and Eastern Uganda experienced pregnancy, postpartum care, reproductive counselling, social support, stigma and coping. Methods We conducted an interpretive phenomenological qualitative study at Kawempe National Referral Hospital and Mbale Regional Referral Hospital. Thirty-five unique women with confirmed SCD participated: 25 in in-depth interviews and 10 additional women in two site-based focus group discussions. Participants were purposively selected to capture variation by pregnancy status, postpartum status, parity, education, marital status, site and pregnancy outcome. Interviews and discussions were audio-recorded, transcribed verbatim, translated into English where necessary, de-identified and analyzed thematically using an interpretive phenomenological approach informed by a socio-ecological lens. Results Women described pregnancy with SCD as a complex reproductive and health-system experience shaped by fear, family responses, financial vulnerability, provider attitudes, fragmented referral pathways and wider social norms. Five interrelated themes were identified: navigating fragmented and poorly coordinated care; financial strain and inconsistent access to medicines, blood and investigations; provider attitudes, limited communication and reproductive counselling; emotional distress, uncertainty and fear for self and baby; and coping through family support, peer networks, faith and self-management. Myths that people with SCD do not survive into adulthood or should not reproduce contributed to secrecy, stigma and delayed care-seeking. Participants recommended multidisciplinary SCD-responsive antenatal and postpartum services, clear referral pathways, respectful counselling, reliable supplies, financial protection and strengthened psychosocial support. Conclusion Women with SCD require maternity care that goes beyond risk avoidance. Integrated, respectful and multidisciplinary services that combine clinical preparedness with reproductive autonomy, psychosocial support and continuity across pregnancy, delivery and postpartum care could improve women’s experiences and outcomes in Uganda.